Ongoing Projects

To Establish a Paediatric Home Haemodialysis service for Scottish Children.

This service is now up and running for the first time EVER for Scottish Children

Kidney Kids Scotland are working very closely with The Royal Hospital for Children in Glasgow to establish a home haemodialysis service throughout Scotland. One of the charity’s main goals since its inception in 2000 is to ensure that Scottish children with renal illness receive treatment as close to home as possible. This project is by far the largest commitment the charity has ever taken on, but we feel the difference that it could make to the most chronically ill children that we help would be life changing, not only for the child facing a kidney transplant but for the whole family.

As you may already know The Royal Hospital in Glasgow is the only centre in Scotland that provides a dialysis service to children with end stage renal failure. At present no matter what the child’s postal code they have to travel 3-4 times per week for this life saving treatment which lasts 4 to 5 hours at a time. Some families even have to relocate. Kidney Kids Scotland have supplied, with the help of trusts and paople like yourself every haemodialysis machine used within this unit. I am very aware that many trusts have helped fund the Haemodialysis machines used within this unit but I would like to make the point that even after a home haemodialysis service has been fully established within Scotland this unit will still be a huge necessity for Scottish Children. Home haemodialysis will not be suitable for every child but will be life changing for those that are.

Challenges:-

Kidney Kids Scotland have been fundraising for the last few years to purchase Home Haemodialysis Machines. We have successfully with the help and generosity of trusts provided two home haemodialysis machines. These have and are now being used as staff and family training aids within the renal department at The Royal Hospital for Children, Glasgow. Taking this project further has been a very slow process which has been delayed by the major hospital move from Yorkhill to the new Royal Hospital for Children in Glasgow. There have also been some serious staffing issues within the Haemodialysis unit in Glasgow which had reached critical numbers. The focus was therefore on the existing service rather than trying to expand the home haemodialysis service. The staffing issues are now being addressed by the NHS and the point has been reached that the home haemodialysis service can now be further developed.

To establish this service involves:-

Funding a clinical nurse specialist to establish the home haemodialysis programme throughout Scotland. This post will not be ward based but will focus on where the dialysis need exists at the time, for example a new patient eligible for Home Haemodialysis within the Highland area. The post will compliment and support our existing home nurse specialists and work very closely with the specialist haemodialysis team within the unit in Glasgow. This nurse will offer the families comprehensive training on one of the Home Haemodialysis machines already purchased by Kidney Kids Scotland in order for them to become confident and self-reliant with the equipment and procedure. The length of training varies, depending on the individual - it could be from 6 to 16 weeks or longer. When the nurse is confident with the family and patient’s ability to carry out this treatment, arrangements by the NHS will then be made for the hire of a home haemodialysis machine for each individual family for as long as is needed. There will be a support team available to the family once home 24hrs per day. The charity have agreed to fund this post for a maximun of 3 years. This post will cost £45,950 per annum.

The science is clear. This reliable, practical, portable home haemodialysis machine will not only be life changing because of the convenience of the child being able to dialyse at home when it suits, but also due to more frequent dialysis has massive health benefits. Please find a comparison between the present in-centre haemodialysis compared with the new home haemodialysis.

Conventional in-centre haemodialysis (The Royal Hospital for Children Glasgow)

Dialysis centre staff perform treatment

3 days per week (MIN)

3-4 hour treatment

Dialysis time scheduled by clinic

More frequent home hemodialysis

Trained parent and/or carer performs treatment

5-6 days per week

2.5-3 hour treatment

Dialysis time scheduled around their life

Portable

More frequent home haemodialysis may offer health and quality of life benefits such as:-

Improved survival

Much quicker recovery time after treatment

Better blood pressure control with fewer medications

Improved appetite and the ability to drink more

Better mental and physical health

Reduces stress of the heart

Kidney Kids Scotland Family Weekend

This weekend is open to families from all over Scotland. Places are limited and will be offered on a first come first serve basis. The weekend aims to provide* a chance for the whole family to spend some quality time together * an opportunity for parents/carers to find out more about their child's illness and ask questions in relaxed surroundings * meet other families who understand For more information and an application form please phone 01324 555843